From Our Readers: Comments & Suggestions - 12/4/13

We find that about 12% of healthy women aged 17 to 40 suffer from POTS (more than 30 bpm or an increase to heart rate greater than 120 bpm within 10 minutes). Some have hypotension (I am not sure of the proportion but it’s around one third).

So while POTS is a subgroup of people with ME, they are probably the group with a tendency for POTS anyway.

They need test people with ME very early on in their illness because I suspect that the POTS is already present in the subgroup and worsens over time of the disease.

The cause is unknown but probably due to decreased cerebral flow which may be accentuated in ME/CFS. Some people do actually enter syncope. I believe this was some of the reason why many women fainted in the Victorian era. (Of course some may have had ME/CFS). The reason was vasovagal syncope.

Erica thanks so much for this well written summary of the events surrounding the IOM Controversy. I did not even realize that there were two petitions available to sign related to this controversy. Yes, I have been a bit overwhelmed and confused by the sheer volume of information this controversy has raised. However, I thank you and other patient advocates who are able to so articulately communicate very legitimate concerns with this contract and the current ME/CFS definition.

I would strongly encourage patients, family members and friends to consider signing both of these petitions (available on-line) to express your concerns as well. The more voices who are willing to speak up, even if just adding a name to an on-line petition, can have a significant impact on making us visible to the world by allowing the sheer mass of our numbers to be both seen and heard.

As has also been linked in this article, here is where you can sign up to be included in these two petitions:

This is a very well written article. It explains clearly and thoroughly what all the noise has been about. I'm appalled at how experts in this disease can be so easily dismissed just so that a government organization can pursue their own agenda.

There has to be some way to put a stop to this! As you pointed out, there are people being put at significant risk because they are erroneously being diagnosed with ME/CFS. Then, there are people who spend years before being diagnosed - years that could have been spent in proper treatment, instead of being told "it's all in your head".

ME/CFS patients are often too sick to fight the good fight. However, having a clear understanding of the facts means I don't have to waste hours, days, weeks or even months trying to figure it all out on my own. Thanks to the work you have done, I know how I can add my voice to the fight. ~ Posted by: cphero Nov 9, 2013

Due to the devastating effect chemicals have on people with MCS, those that suffer MCS along with ME/CFS FMS would be well advised to carefully monitor drugs they take even those that eminent Drs like Lapp recommend. I recommend you introduce them one at a time to observe their effects. ~Posted by: gbrown2, Nov 18, 2013